Monday, April 28, 2014

Progress . . . . No Matter How Small!

This weekend was our eldest girl's birthday.  She turned two, so we tried to make it as fun for her as possible.  It was rainy and cold so going to the local zoo was out.  Instead we took the family to a local pizza/play area place. 

I have to admit I was nervous taking our son there.  These kind of places tend to overstimulate him quickly and then we have stimming and meltdowns to the max, which result in us usually dragging him out of the vicinity and trying not to die a thousand deaths as he is screaming, hitting, and kicking all the way to the car.  However, this time he remained calm!  There were kids in the play area who were yelling and being rough, and he remained calm and played well with the other kids.  He fussed a little when we made him stop to eat lunch and later when we told him it was time to go, but nothing more than a NT kid his age would do.  No screaming. No hitting. Nada!  It. was. AWESOME! 

Of course, when we got home he was starting to stim and was clearly overstimulated so we were unable to get him to take a nap and then that night we had my sister and two of her kids over so once again he was on stimulus overboard and getting him to sleep for the night was really tough!  However, his behavior in public was amazing and this was progress!

Then on Saturday he wanted to go shopping with me.  We went to Target and then Wal-Mart.  Again he did wonderful.  Didn't touch anything he wasn't supposed to.  He didn't meltdown when I didn't buy something he wanted.  He didn't insist on pushing buttons when we checked out.  However, we then went grocery shopping and that is when the meltdowns started.  One was over not being able to pick out a watermelon himself.  The other for not being to push "the red button" on the peanut butter machine.  The third was for not letting him open the cooler and get the milk himself.  (I opened the cooler for him so he could get the milk since I knew he couldn't do both.)  While that was frustrating, the fact that he did well at the first two stores, especially at Wal-Mart since we were there the longest, was GREAT!

The one thing I have learned about him is that independence for him is extremely important.  He hates being told he can't do something due to his age or size.  I have to reluctantly admit that he gets that honestly by me.  I was and still am the same way, especially if someone tells me I can't because I am female.  Nothing will make me even more determined to do it.  It's just something that I need to remember and find the balancing act of when to let him try and to keep him safe and also to help him understand when limitations are necessary.  It's a learning process.

I just wish the stupid insurance could see or understand the changes that are occurring since I attribute part of it to the medication that he is currently on and that they are questioning the necessity.  Hopefully, wiser minds will prevail and someone with some sense will approve it so we can all move forward.  We should have a decision by today either way.  Fingers crossed!

Thursday, April 24, 2014

My Happy/Sad Moment

Today in one of the Sensory Processing Disorder (SPD) support sites for parents with kids who have SPD, a fellow member mentioned a national crediting agency for behavioral specialists.  I laughed to myself and thought I would do a search to see if there was anyone listed in my area.  I just knew there could be no way there would be anyone local, but was curious to know if there was even anyone in my state that was credentialed.  To my shock, there was someone local listed! To say I was elated, would be an understatement!  FINALLY I had found someone that might be able to take some of the burden off of me and help me with my son.

First, I looked her up with our insurance and of course she was not listed as a provider, (Have I mentioned how much I dislike our insurance?) but I didn't care. I still wanted to find out where this person worked to at least know the option might be there.  That's when the sad moment comes in.

When I looked her up, I sadly saw that she works for a drug and alcohol rehab facility.  I wanted to cry.  That little glimmer of hope of some small reprieve was dashed.  Sigh!

Oh well.  We are no worse off than before.  Just one more reason to tuck away the thought of going back into the field and opening up some type of practice to help mothers like me.  Or at least that is what the crazy side of me is thinking, while the practical side is truly questioning my sanity of even entertaining the idea when I can barely keep my head above water now.   Guess time will tell as to which side wins.

The Game of Numbers

This week has been a bit stressful.  We went to refill a prescription for my son only to find out the insurance had denied coverage for it and wanted more information from the prescribing doctor.  After further digging, MANY phone calls, and emails, we found out that our "wonderful" insurance has decided that my son's condition warrants a "step" program for medication, that we did not know about until now I might add.

What's a "step" program?  It means that the powers that be have decided that they only want to spend as little money as possible so that require you to try a medication that has a generic first.  If that doesn't work, then you can move up to a Step Two medication, which is a little more expensive but doesn't make their tightwad accounting books scream in agony.  If that medication is deemed as not working, then you will be blessed by the insurance gods to be allowed to be prescribed a Step Three medication, which is what my son is taking.

Here's the kicker:  The paid for the initial filling of this medication but "only as a courtesy" they wrote in their letter.  And then waited until we tried to refill it to deny it and start the prior authorization process, which meant that either my son went without meds, we started over with a new medication, or we paid for it ourselves at the tune of $222.98 per month.  Now remember this little guy is only 4 and we have been trying for over 6 months to find a medication that would work for him and FINALLY found one that not only helps him but that he willingly takes and says that it helps him.  Plus it is a liquid, which helps in my little guy in taking it.

So now here we are sitting and waiting for somebody who is not a doctor and who has never seen or met my son make a decision as to what type of medication "is best" or in other words what type of medication will cost them the least and forget what works or what is best practice for this child.  Never mind the fact that they are suggesting making a guinea pig out of my son and force his body to go through changes on medications and all that goes with that.  Have I mentioned I HATE our insurance company?

Oh, yeah, and they would not send the paperwork to the prescribing doctor (who refused to call the insurance company to request the paperwork) to fill out for them to "make their decision" until my husband sent a not nice email to his HR department telling them how bad the insurance company sucks and how uncustomer friendly they are.  And my husband did that after I called him in tears because when I called the insurance company to ask them to send the paperwork was told that I was not allowed to do so even though it is my son that is affected.  They said only the prescribing doctor could request the paperwork be sent, which the doctor refused to do stating he did not have the staff or the time to "sit on the phone for 15 minutes" to talk to someone with no medical degree to justify his reasoning for prescribing the medication he did.  Consequently, we are stuck between these two entities over a power struggle regarding money and power.  Yeah, it has sucked. 

But the paperwork has been sent to the insurance company by the prescribing doctor, and the insurance company made it VERY clear that they have four business days to make their decision.  Awesome!  Way to do what's best for the patient!  NOT!  (I won't say who the insurance company is, but I can guarantee you have seen their commercials and how they are there for you as the customer no matter what the situation in your life and always will be.  What a laugh!)  In the meantime, we paid for filling this month's prescription completely out of pocket because everyone who IS involved in my son's life and HAS SEEN him or worked with him has noticed a dramatic improvement in his behavior and thinking and we didn't want to hamper that progress due to a bureaucratic/power struggle showdown.

So here we sit and wait, and wait, and  . . . . . . . . .

Thursday, April 17, 2014

One of Those Days

Let me preface this post by stating:  Yes, I realize I am blessed and yes, I realize things could be  worse.  It's just been one of those days.
Today, I HATE Asperger's.  I hate the word.  I hate the condition. I hate the stigma. I hate what it does to my son, my husband, and our family as a whole.  I hate that I can't just take my kids to a public place and let them all just play.  I hate that I have to plan and pre-think every activity and prepare for each one with social stories, calming technique reviews, and then keep a close eye on my son's every move.  I hate that I can't just relax and just go out by myself without worrying about what is going on at home.  I hate that I can't have just any of the girls willing to babysit able to just do so, because they won't know how to handle my son.  I hate that I can't talk to my husband and have him understand how I feel.  I hate that my husband won't actively get involved in therapeutic techniques so I am not carrying the entire burden/load, because he has the same issues as my son and doesn't see a problem.  I hate the fact that I live, sleep, eat, and breathe autism and SPD.  I just want to be a mom.  I just want to be a "normal" family and be able to have people over and my son able to go to other people's homes without worrying if he is stimming or hyperfocusing.  I could go on and on . . . . . .

Why this rant?  Because it was a beautiful weather day outside.  "Huh?" I hear you say.  Well, let me explain.  On beautiful weather days, kids and their parents go outside to play.  They smile and interact with one another and kids play together and run back and forth from one house to another doing all the things that kids do.  However, this is not the case in our world.

In our world, my son is ignored or shunned A LOT!  For example, when we first moved into our neighborhood a year ago, a family across the street came over one day to introduce themselves stating that they had all boys and my son was more than welcome to come over and play "anytime."  One day we happened to be outside the same time as them and we walked over to talk and say hi and doing the neighborly thing.  The mom then invited my son to stay and play with her boys.  I said sure and told her we would be back in an hour to pick him up, but if he became too much to not hesitate to send him home. 

After the hour went by, my husband went over to pick him up and the mom stated that he was fine and there were no problems.  Later that day, my son told me that he had gotten into their van and was pushing all the buttons in their van until the mom got mad at him and told him to get out.  (We had just bought a Toyota van and the neighbor's had one as well so he was "checking to see if it was the same.")  Of course, I wanted to die a thousand deaths, but figured it must not have been a problem because they didn't say anything when my husband picked him up. 

A couple of weeks went by and these same people were no longer friendly.  They would go in their house as soon as we would come out front and they would not acknowledge us or say hi if they drove or walked by.  I finally decided one day that I had had enough of the silent treatment and wanted to get to the bottom of this, so I went over to talk to them and to apologize if that was the issue.  The husband answered the door and I asked him if there had been a problem.  He said no. That my son had been fine and he did not know what I was talking about in regards to the van, because what my son said he did did not happen.  He then said they were busy playing in their backyard and he did not have time to talk to me and basically shut the door in my face.  We haven't talked since.

In fact a couple of days ago we arrived home from going somewhere and my son saw them outside playing.  He hurried and got out of the van and went out front and yelled "hi", but was ignored.  My heart sank.  He said it six times before FINALLY one of the boys would say hi back.  He is too little to understand their rudeness, but I couldn't help but be sad and angry.  So much for the golden rule and Christian values from these people.

We also have a situation where there is a boy around the corner from us who is the same age as my son and they are in the same church class.  At church my son and this boy talk nonstop about playing at one another's houses and what they want to do.  Myself and my husband have talked several times with both of the boy's parents about having a play date and every time we talk to the mom we are given excuse after excuse as to why they can't. 

One day my husband saw them outside and invited the boy to a movie with our son.  The mother then texted me asking me if it was okay if she came as well.  Of course, I said yes and we all went to the movie and home without any problems, or so I thought. 

A couple of weeks later I met with the leaders of the children's program at our church and explained to them what was going on with my son.  Unfortunately, the mother of this boy is one of the leaders.  After I was done, she immediately went into this lengthy explanation as to why she hasn't allowed her son to play with mine using the "it's not you, it's me" speech stating it was not my son's behavior she was worried about, it was her son's.  I explained to her that if I could handle members of the Bloods and Crips in Las Vegas (which I used to do in a job I had), I think I could handle two four year old boys just fine.  The mother has not talked to me since.  In fact a couple of weeks ago, I overheard her talking about a party that she had had for her son and all who was there, to which my son was not invited.

The heartbreaking part in all of this is that my son begs me to let him to go over to these kids' homes to play or to have them come over to our house to play.  I have had to come up with reasons and excuses as to why it's not going to happen.  I mean how are you supposed to explain to a four year old that sometimes people just plain suck and these kids' parents fall under that category?  As a parent, I go back and forth with being angry and being sad.  I want to yell and scream at these people and tell them how unchristian they are and so much for being kind and accepting to everyone as I know their religion teaches since we are all of the same faith.  I mean they haven't even given him a chance.

Instead, outwardly I try to be the bigger person.  I smile and make a point to wave or say hi.  I even take over treats every once in awhile and always make a point to greet their children by name.  The only neighbor kid who does come over (who is a girl his age), I make sure that we have fun play dates by doing activities and letting her take home something she creates at our house.  Because I know these mother's talk and I figure maybe, just maybe, the mother of this girl will tell them that my son is not the scary, horrid kid that they are so afraid of.

I don't know.  I just wish he could be "normal" or there would be some magic pill that could help him to be that way, especially in public and we could just put all of this behind us.  It just sometimes Asperger's is soooo exhausting and overwhelming and mean people just plain suck.

Wednesday, April 16, 2014

The Beginning

Well, here I am beginning this blog.  People may wonder why I would want to do this, but frankly, I am hoping that this will be cathartic for me.  You see, I am married to and a mother of persons with Asperger's Syndrome or high functioning autism or now the new DSM-V label of Autism Spectrum Disorder.  While my husband has not been formally diagnosed and my son no longer fits under "the Spectrum" thanks to the new diagnostic criteria, trust me, I deal with the quirks and idiosyncrasies of this condition in both my husband and my son.  This means that I get to live with the adult and the child version of this and at night when they are both tired and are both stimming . . . . . . . you can bet it is reeeeaaaalllly interesting around here. 

What's even better is that I am a trained professional mental health counselor that NEVER dreamed I would be doing therapy in my own home with my own husband and child 24/7 at this level.  I mean, sure, what woman doesn't have to do some type of therapy with their husband and children in a normal situation?  But when you live in an Aspie world?  Honey, you are living and doing on a whole different level!

To let you know where this journey began, I need to start back to when my son was a baby.  I always knew he was different.  I mean how many 6 month olds do you know that when coming into a room scans it to make sure that everything is in place as he wants it and if not, crawls over and adjusts whatever is out of place in his mind and puts it back?  For example, every morning I would shut a little window in a playhouse that he would play with and every. single. morning. he would crawl over and have to raise the window up.  Also instead of just playing with his toys, he would have to carefully study it and determine how it worked and/or would attempt to unscrew any screws there may be to take it apart to see how it was put together and this, ladies and gentlemen, was when he was an infant!

As my son got older the quirks became stronger and more noticeable and he became harder to manage.  Something was just off.  I kept telling his pediatrician that something was going on, but she just kept dismissing me and telling me that they would wait until he was in elementary school to evaluate further.

Having a nephew with Asperger's that wasn't diagnosed until age eight and seeing the struggle his parents had to getting him help and dealing with the school, I wasn't about to wait to see what was going on.  Through my own training and research that I did, I knew that the earlier the intervention the better luck we would have in helping my son assimilate with the rest of the world.

So in July 2013 we had him evaluated by a local pediatric neurologist who specializes in autism.  The outcome was that yes, he had a lot of the Asperger traits.  However, with the new DSM-V criteria and the powers that be removing Asperger's completely from the DSM and instead saying it falls under Autism Spectrum Disorder, they could not say he fit "the Spectrum."  Instead they labeled him with ADHD and Sensory Processing Disorder.  And then wrote a several page long report as to what types of services and therapies he would need that essentially said "this kid has Asperger's but we can't say that officially." 

At first I was happy, I admit.  I didn't want him to have the autism label and the public stigma that went along with it.  However, I quickly found out that in the great state that I live in, because he does not have that diagnoses, he does not qualify for ANY autism type services because they are Medicaid paid only and he can't qualify for Medicaid with his current diagnosis.  Also our insurance refuses to pay for anything because they consider his issues to be attributed to developmental delays and therefore are not covered under their policy.  The only thing they would cover is individual cognitive behavioral therapy.

So that is where we began.  I found out that in my area there are only two therapists that specialize in this area, and out of those two only one takes private insurance.  Consequently, that is where we began doing therapy. 

To make a looooooong story a little bit shorter:  Having been trained to cognitive behavioral therapy and play therapy myself, let's just say this therapist is NOT a specialist in this area even though she has sold herself as one to medical professionals in our area.  After only three sessions, both my husband and I said we were done. 

I then took my son to a developmental pediatrician and he gave me leads as to who the "experts" are in our area.  I called and talked to them, and several others locally and in other states and was repeatedly told the same thing:  "Yes, your son has issues that are severe enough to be problematic, but not severe enough to qualify for any services in your area/state.  You are going to have to do the therapy yourself and become the expert."  Greeeeeeeeaaaaaaat!  This meant that I no longer was just "mom".  I now was mom/therapist and am dealing with therapeutic issues 24/7.  The good news is that when I told the experts everything I was doing, they told me that I was doing everything that they would do and I was on the right track.  The downside: I get no break or help.  Even in my private practice that I used to have I got to go home at night and not have to do therapy or think about it if I didn't want to.

It is also a complicated situation because the more I researched/studied, I realized my husband was the exact same way as my son, only an adult version.  He even repeatedly will say, "He acts just like me when I was his age."  (To which, honestly, I just want to slug him and yell, "Then you deal with this!!!")  Needless to say the two of them have a lot of conflicts because in our Aspie world when they are tired/stressed, they both begin stimming which consequently, exacerbates their frustration and stress and they butt heads.  This means that not only do I wear the hats of wife, mother, and therapist.  I also play referee A LOT!  Not to mention I also have two little girls who are a year a part and are currently almost two and almost one.  Needless to say, I am constantly B-U-S-Y!

So this is my world that I live in.  My son is currently 4 1/2 and just finishing his first year in preschool.  Our world can be interesting and quite comical, but also exhausting, frustrating, and lonely.  That's why I am here:  To vent/share/yell/cry/laugh/sigh. 

My grammar, spelling, and sentence structure will not be perfect, so if that bother's you, quit reading.  This is my blog and my space and in a way my own therapy for me.  If along the way there is someone out there that it may help or give a moment of, "Finally, I found someone who understands!"  Then even better!  Because trust me, the Aspie world can be a very lonely world for the neurotypical (NT) caregiver.  Many people shy away because they are scared that they might "catch" it or of the unknown aspect of it.  Consequently, the caregiver is shunned as well, but more on that on another day.

Until then:  sit back, relax, and welcome to our journey!